Sunday, July 8, 2012

Person First (or, "Arrow in the Knee")

I've found myself in a weird little place lately.  Too much work, too much dramatrauma, too much stress.  As my BFF put it so succinctly the other day, I've been putting too many pennies away.  Once upon a time when we were young and very impressionable students, she had a preceptor that explained it thus:  nurses are famous for suppressing things.  Something will happen, she said, and you will have to continue on to the next thing. So, you put it in your pocket for later, like you would a penny.  After a while, the pennies will start to add up and your pocket will fill, to the point of bulging if you are not careful.  If too many pennies are added, the pocket will rip and everything will spill out all over the floor.  My BFF has never forgotten her words and neither have I. 

I've been putting a lot of pennies away lately.  Sadly, I haven't been putting my change in the bowl at  night (like I was supposed to) and it was really starting to affect me.  My pockets were weighing me down and making so much noise when I walked I could barely hear myself think. Instead of doing the things that I usually do, such as this blog, I have been playing a lot of Skyrim.  I've been killing dragons, both literally and figuratively for a few weeks now; losing myself in a game has assisted me in finally emptying my pockets.

I was more than overdue to tap some vacation time and except for a little hiccup with some overtime this past Friday, I will have two weeks to do a little psychological housecleaning.  It is a needed thing,  especially in a family as complex as ours.  As hard as it is, I have had to put myself first for a bit.  Instead of being the mother/wife/nurse, I have to nurture the person part for a while.  It's a lot harder than it sounds, putting my person first, ahead of everyone else.

It was that phrase person first that got me thinking.  It could mean a lot of different things to Team Logan right now, aside from my head spelunking. Our wants and needs are as diverse as the personalities in our little band.  It is not that surprising then, how two little words can describe so much.

As I attempt to delve back into the dim recesses of my memory, I think it was my first semester of Nursing that I encountered the phrase person first in terms of language. Keep in mind, this is the early nineties we are talking about and 'political correctness' was a new, hot button topic.  The concept was pretty simple yet still completely foreign to most of us.  It was introduced to us with the idea that our patients were people, not the sum of their diagnosis.  For example, "Mr. Smith has diabetes", not "Mr. Smith is a diabetic".  "Suzy has schizophrenia" not "Suzy is a schizophrenic".  It sounded silly at first... I mean, what's the difference?

Almost too subtle to grasp at first, the difference, as explained to us by our ever patient professor,  was that the first example addresses clients as people who happen to have needs, while the second was dehumanizing and focused only on the disease or condition.  In essence, you were saying Mr. Smith was his diabetes, nothing more.  It was totally not what we were used to and seemed (at least initially) to be completely wasted on us.  After all, were were a lot of eager Nursing students who were almost obscenely fascinated by disease process and almost blind to the people experiencing it.  In an almost macabre way, it is hilarious;  we were afraid to go into the rooms and wake people up in the morning, but we would crowd around gawking at a gangrenous foot completely oblivious to the person attached to it.

Obviously, I've become a little more savvy over the last *cough* years.  Society as a whole has become a little more aware of the words that they choose, but this kind of thing still persists.  Once I found myself to be the Mom of a little person with Down syndrome, it wasn't much of a stretch to guess that person first language would continue.  Wyatt is not "my Down's kid" or "a Down", he has Down syndrome. 

In our 'real' lives, outside the context of this blog, we take person first out a whole new door. I do not refer to him as "my son with Down syndrome", rather he is simply "my son".  There are many other identifiers that are employed long before we touch on the extra chromosome, including "twin".  I'll even refer to his AVSD diagnosis before touching on his Trisomy 21.  Sometimes I forget and think of him as my youngest child, but then I have to remind myself that he is three minutes older than Zoe.  He is very much his own person complete with likes and dislikes, wants and needs... all of which he can communicate quite clearly.  He is Wyatt.  Believe it or not, I even forget he has DS sometimes.  He's one of my kids, doing his own thing at a slightly slower pace.  I've mentioned before my early concerns that having two different babies at two different levels of development would just highlight his Down syndrome.  Boy, was I wrong.  I just have three different kids, is all.  He does have some "special needs" that seem initially above and beyond those of the other two, but when you really look at it, I'm doing the same thing for all the kids.  How we approach things with Wyatt is the difference.

I was talking to a friend the other day whose 5 year old son has DS.  M was at the beach and a South Asian lady in a sari came up to her and said "My daughter looks like your son".  I had to crack up when my friend replied "Oh, is your daughter blonde too?".  At the woman's confused look, my friend continued on by saying her husband is Portuguese so most people are surprised at her children's light coloured hair and aren't genetics wonderful, etc, etc.  The lady, her mouth twitching into a smile, replied "No, I meant my daughter has Down syndrome".  M wasn't being sarcastic and aside from being tired from too many night shifts, is a pretty smart cookie.  It just didn't occur to her immediately that DS was the topic as her son is a little boy first.  His chromosome count wasn't even on her radar.  I laughed when she told me this and shook my head.  I'm learning that this is typical for a parent of a non-neurotypical child;  we don't think of our kids as different a lot of the time until it is pointed out to us.  They are people first.

It's funny how one phrase can mean so many different things, but it does.  It's the same with "Down syndrome" or "Autism" or anything else as well.  It comes down to a matter of perception, a matter of choice, even a matter of timing.  This week, for us, is person first.  We are not defined by our perceived shortcomings or level of ability.  We are not defined by our professions, our roles or the amount of pennies in our pockets.  We're not defined even by our Xbox skills... which is good as my husband teases me mercilessly about me "driving" my character like it was a remote control car.  Team Logan is a diverse little microcosm.  Just like your family.  Just like everyone else's family.  We'd probably be a lot better off if we remembered that more. 

Now, if you will excuse me, this particular person is going downstairs to forge some Dragonscale Armour.  It should serve me well, both in Skyrim and metaphorically in the days to come.  Sometimes we all need a little therapy;  sometimes our sword and magic helmet are not enough.  It's the people that we surround ourselves with that will make the difference between whether we come out of the basement again or not.  I am blessed with the persons that inhabit our little house.  Team Logan has many adventures ahead of us yet;  it would be a shame if one of us took an arrow to the knee now.


  1. My latest *little peeve* is "my child was born with Ds". I never liked how it sounded, then I tweeted about it and said that I don't like it because to me it makes it sound like you could somehow contract or develop or get Down syndrome at a later stage, and one mom chimed in saying she didn't like saying it because then people assumed that she'd done something during her pregnancy to bring about Ds.


    One of my friends from my other blog asked me whether she was wrong in having thought that there are other conditions imitating Ds that can develop later.


    That's when it really hit me how much words *really* matter, how much education is constantly needed, and How. Frikken. Vast. the universe of misunderstandings is.

    Keep up the good fight! And I'm not referring to Skyrim (Personally I get inside Terry Pratchett's head when I need to switch off. Could be something for you as well?)

  2. "First Person" is something I have thought about and make a point of remembering in my daily life. I'm not a nurse but I worked very closely with psychiatric nurses for 10 years of my career and have become somewhat of a mental advocate (yes on a small scale but it all matters). Naming people by a diagnosis just rubs me the wrong way. With a few exceptions we don't do that to people with illnesses that we don't consider "disabilities". We don't refer to people as cancer or heart disease. Why should this be acceptable?

  3. I found it so interesting to hear that person first language is part of your education/training. At the Lightning Kid's echo-cardiogram the nurse referred to him as a "Down's Baby", and when I tried to gently correct her to "Baby with Down's" she looked at me like my hair was on fire and replied "that's what I said: Down's Baby". I was pretty disappointed, as I had kind of hoped that medical professionals might be familiar with the difference.

    P.S. I was into Morrowind before kids, and I do have City of Heroes installed, but I think I've had the energy to play it approximately twice in the two months I've had it.


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